Advocacy
The Hydrocephalus Scoop on Capitol Hill — October 2025
We hope you’re hanging in there. It’s been a tough few weeks in D.C., and we wanted to give you a quick update on what’s happening in Congress and how it might affect our hydrocephalus community—especially when it comes to healthcare access and telehealth.
The Hydrocephalus Scoop on Capitol Hill — August 2025
Members of Congress have returned from August recess…and there’s a lot of work to do! Here’s where things stand.
The Hydrocephalus Scoop on Capitol Hill — July 2025
Congress passed the One Big Beautiful Bill, cutting $1B+ from Medicaid and risking healthcare for 11.8M, including many with chronic conditions like hydrocephalus.
Issue Brief: Expenses Crucial for Biomedical Research – Indirect Costs
While indirect research costs are integral to the long-term sustainability of biomedical research institutions across…
Speaking Up for Kids: Bella Ferris Shares Her Story at UCLA Children’s Hill Day
Bella Ferris and her mother, Gloria, had the privilege to attend the Children’s Hospital Association Speak Now for Kids Family Advocacy Day in Washington, D.C. She represented patients at the UCLA Mattel Children’s Hospital while meeting with congressional leaders and staff.
Hydrocephalus Association Statement on Reconciliation Bill Passage
The Hydrocephalus Association is deeply concerned about the bill’s sweeping cuts and changes to Medicaid. This will have severe impacts on healthcare access and coverage for individuals with chronic conditions and disabilities.
The Hydrocephalus Scoop on Capitol Hill — June 2025
June updates on Medicaid cuts, CDMRP research funding, and telehealth bills impacting the hydrocephalus community. Make your voice heard on the Hill!
Explainer of the President’s FY 2026 HHS Budget Proposal
President’s FY 2026 budget proposes major NIH cuts, agency mergers, and restructures that could reduce neuroscience and hydrocephalus research funding.
The Hydrocephalus Scoop on Capitol Hill — May 2025
House passes bill with major Medicaid changes—millions could lose coverage. Learn how this impacts the hydrocephalus community and what’s next in the Senate.
Medicaid Impact of U.S. House Reconciliation Package on People with Hydrocephalus
Learn how proposed federal Medicaid changes could affect people with hydrocephalus, including burdensome administrative requirements, cuts to vital health services, home care, and coverage for medical equipment.
The Hydrocephalus Scoop on Capitol Hill — April 2025
Congress has returned to Capitol Hill following Easter recess and is beginning the reconciliation process for a major legislative package. Big decisions are being made — and we have everything you need to know.
Assessing Recent HHS Reductions in Force (RIF) Layoffs and Their Impact on the Hydrocephalus Community
Mass layoffs at HHS are disrupting key health agencies like the FDA, CDC, NIH, and ACL—jeopardizing research, care, and innovation for the hydrocephalus community. These cuts threaten access to treatment, delay medical device approvals, and weaken support systems for patients nationwide.
When We Cut Research, We Cut Hope: The Human Cost of Medical Funding Cuts
When we cut research, we do not just slow progress. We delay relief. We postpone innovation. And, for many patients and families, we delay hope.
The Scoop from Capitol Hill – March 2025
Get the latest federal updates on hydrocephalus research, advocacy, and policy changes. Learn how you can take action to protect critical funding and healthcare access!
The Scoop from Capitol Hill – February 2025
House and Senate Republicans have been focused on passing the Administration’s priorities. The Senate approved a billion-dollar budget framework focusing on defense and border enforcement funding. On the other side of the Capitol, the House recently passed its own budget framework. This package is wider in scope and costs.
Hydrocephalus Association Medical Advisory Board And Scientific Advisory Board Issue Response to Cuts to NIH Indirect Cost Payments
The Hydrocephalus Association Medical Advisory Board and Scientific Advisory Board urge the Administration to rescind the directive for the National Institutes of Health (NIH) to cap indirect costs for research funding at 15%.
Hydrocephalus Community Advocates for Change on Capitol Hill
The Hydrocephalus Association brought over 50 key leaders from the hydrocephalus community to advocate for change by meeting with their congressional representatives on Capitol Hill.
The January Hydrocephalus Scoop on the Hill
The 119th Congress is in full swing. Republican leadership is zoned in on crafting a large legislative package that includes key priorities around tax, immigration, and budgetary issues. The package will likely go through a process called reconciliation, which allows certain budget-related bills to bypass the 60-vote filibuster in the Senate.
Advocates to Rally on Capitol Hill for Hydrocephalus Awareness and Research Funding
50 key leaders in the hydrocephalus community from 18 states will convene in Washington, D.C., for Hydrocephalus Capitol Hill Day.
Hydrocephalus Association Expresses Concern Over Executive Orders That Could Affect Hydrocephalus Research
The Trump Administration recently issued Executive Orders that could have long-term consequences for hydrocephalus research, potentially impacting the health of hydrocephalus patients, particularly children.